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Two steps forward, 1 step back

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givincare

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I feel so down today. So does Patrick. While gathering ourselves to leave OT and go to Speech, Patrick had another mini-seizure. It only lasted two or three seconds, but it was what it was. He was sitting on the mat and just slowly slumped over on his side. I was sitting in a chair next to him in the direction he slumped, so I was able to catch him before he fell completely over. No sooner had I started to upright him than he came out of it, unaware what had just happened. He felt fine, so we decided to go on to speech.

 

He had another seizure in the middle of July, and the doctors had upped his trileptal dosage. This seizure occurred in speech therapy and lasted 1-2 minutes. It was quite a bigger than the one he had today. We had hoped that we were getting his seizures under control...

 

This is a big blow to Patrick. His biggest goal besides his speech is to be able to drive again. With each seizure, he sees that goal slip away a bit more. And everytime he sees the finish line move further away, I see his motovation deminish. His motovation is what has allowed him to recover to the level he is at now. Just today in speech, the therapist went over his re-test results, and it showed a very marked improvement from where he started two months ago. He isn't thinking about that though. He is sitting on the couch, dazing (and dozing) off, the knowledge that he had a seizure hanging in the air. It's the pink elephant in the room.

 

Another accomplishment for Patrick is that he was taken off the coumedin a week or so ago. When we met our new neurologist when we moved here, we decided to do the tests again to look for DVTs, heart problems, and any coagulation issues. While we were waiting for all the results to come in, Patrick had that last seizure. We called his neuro, but he was on vacation. When he got back to town, we alerted him to the seizure to see if he needed to see us (we of course had already told his family doc) and he decided he wanted us to come in. It was during this visit regarding the seizure that he also gave us the good news of NO MORE COUMEDIN!

 

Patrick had really been feeling like things were moving his way. Now this. Again. URGH! I know life isn't suppose to be easy. I just wish we were dealing a little bit more with the life-obstacles most people our age were facing, not always Patrick's health.

 

Kristen

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Kristen:

 

sorry about patrick's seizures. today was down day for me 2, not healthwise but why me feelings, and not fair feeling, but I guess I have to collect myself and march on life's journey with what I got and making most out of every day.

 

hugs

Asha

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First, <_< sorry for Patrick's setback, and you should have a heart-to-heart with his neuro to make sure he's medicated enough against future seizures. -

As I take meds, so not to have seizures, its important for Patrick to have his blood levels taken @ least twice a year - This is one way for doctors to monitor Patrick's levels of meds

Good luck :blush:

 

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Kristen (((((hugs))) :friends: it is a big disappointment when life trips us up with yet another "little medical problem" as my doctor calls them.

 

With all the new medication SURELY something could be done to keep seizures at bay? Or does that mean returning to the zombie state? Maybe, like Ray, what would suit one of Patrick's coditions would clash with the available medication?

 

Anyway, I'm thinking of you both. And will try to have a chat with you soon. :chat:

 

Sue.

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Thanks Sue,

I am looking forward to it.

 

June,

Thanks for the advice on the blood levels. He had been having them tested regularly, and I have a feeling the doctor will want him to have it done again this week.

 

 

 

Kristen

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Hi Kristen,

 

My husband was dealing with seizure's too. About a year and a half after the stroke he had the first one. They put him on Dilantin but he still had 3 more. The last one was 6 months after the first which was around July 2004. Like Patrick each one set him back as he was so looking forward to getting his license back too. After they put him on Lamictal along with keeping him on the Dilantin he's not had any episodes since the last one in Jan. 2005 and got his license back in May (I think) of this year.

 

He's a happy camper now and has so much more freedom. Has Patrick tried the Lamictal?

 

Take care and you'll both be in my prayers for NO MORE.

 

Cindy

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Thanks Cindy,

 

He hasn't been on lamictal, the plan so far has been to keep upping the dosage of trileptal until he either has no more seizures or he starts experiencing side effects from the drug- whichever comes first. He had been doing pretty well on it at first, but it seems the seizures are coming more frequently now. The only good thing is the seizures are considered "break throughs" and not grand mal (he only has those if he misses a dosage).

 

They are just scary and it worries me because even with the small ones, he loses all control of his body and just falls wherever he is. I have been lucky that he has been seated every time but during the first two.

 

I don't want to live our lives never doing anything because if he has a seizure he could get hurt. I would obviously never put him in any danger intentionally...but what can you do if a seizure comes on with no warning while you are... walking across an intersection..etc, etc, etc.

 

Seizures suck.

 

Kristen

 

(BTW, thanks for the prayers-lol. Seriously, thanks)

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Hi Kristen,

 

I wouldn't walk through any intersections but how about doing other things such as shopping, restaurants, movie theater, etc. We didn't let those types of things stop us and if he did have one, I could see it coming on and even though he's a big man, I could get him to the floor and out of any danger.

 

I think a lot of people do "normal" things even when they're dealing with seizures. I know it's scary but I wouldn't let it beat me or my husband down.

 

When my husband had the last seizure in Jan. it actually helped in his recovery from the stroke. I know it sounds crazy but sometimes it happens. In layman terms it jiggled some stuff up there in his brain. His speech got better and some of the numbness in his right side disappeared.

 

I know seizures suck, but in this case after I saw what it did, it was a catch 22.

 

Again, I hope they get the medication right very soon for Patrick.

 

Cindy ;)

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Kristen,

 

On the off chance you've missed this link that's been posted many times on the board, check this out: SEIZURES http://www.nlm.nih.gov/medlineplus/seizures.html Others here who have dealt with them say this site is very helpful and the best.

 

I also agree with Cindy, let Patrick do 'normal' things except for those where he can get hurt or hurt someone else.

 

Jean

 

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Hi Jean,

You gave me that sight info right after Patrick had his first recognizable seizure, and it has been very helpful. I sent most of our family there to check out the info as well...THANK YOU :)

 

Cindy,

I try so hard to keep our lives as normal as possible, and I try not to think of the possibility of a seizure happeneing at any second. I unfortunaley, have not been able to determine or identify when a seizure is about to happen. It's like I look over at him, and he's having one.

 

It's weird, I feel like I am harrassing the man at times...I hear him make a strange noise or catch a glimpse of his weak arm flailing in my perephrial vision...then I'm looking him over to make sure he's not having a seizure...he's not, he's working on his weak arm or clearing his throat or something simple. But he sees me looking at him with concern and he knows what I am thinking...

 

Thanks for your thoughts,

Kristen

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